The family of a baby boy who died from a little-known disease are spearheading an awareness and fundraising campaign to help raise the profile of the currently incurable condition.
Little Daithi O’Doherty from Derry was born on November 5, 2014, 31 weeks into his mother Karen’s pregnancy.
He had stopped growing at 27 weeks and weighed just 1lb 9oz when he was born.
Baby Daithi spent eleven of his sixteen months here in hospital and underwent over one thousand blood tests and a muscle biopsy before finally being diagnosed with Mitochondrial Disease (Mito), a genetic disorder which claims the lives of more children than all childhood cancers combined each year.
Tragically, Daithi passed away at just 16 months on March 5 this year, and his parents David and Karen have kept their vow to him to make people aware of the condition since, enlisting the support of family, friends and the wider Derry public and business community in the process.
Last weekend saw the council offices in Derry lit up green at their request, with the assistance of local Sinn Fein councillor Elisha McCallion, as part of that Mitochondrial Awareness Week, in tandem with the illumination of other landmarks across the world, including Niagra Falls in the US and major buildings in Amsterdam and Sydney.
Mitochondrial disease refers to a group of disorders relating to issues with mitochondria, which are structures inside all cells in the human body, with the exception of red blood cells.
Mitochondria create energy for the body from food and oxygen, and are the powerhouse of the cell, but without this working properly, complications emerge.
Karen likens the condition to “trying to power a home on a Duracell battery”, and any illness or virus can accelerate the condition.
The disease can become apparent at any age, and Karen said she has met several adults who have been diagnosed later in life. “There is no treatment for it, the only thing they can give is a cocktail of vitamins.
“It is a massive issue, and with us having been with Daithi in the Royal Hospital for so long, we know lots of people affected by it.
Karen said that when Daithi was born she knew there was something else wrong besides being born premature.
“He was really small, the size of one hand. He was struggling to put on weight. I remember him getting home and being worried that maybe he shouldn’t be home. 13 days later he ended up back in hospital.”
“His progress was so slow. It was one step forward, five steps back,” his mother said.
Daithi looked like the perfect little boy, and Karen said he was “always full of beans when he was well, always smiley”.
However his condition became progressively worse. Daithi’s symptoms included lactic acid levels always being very high and any time he took sick, his heart would be under a lot of pressure through hypertension.
Daithi also had stomach problems and vomited two to three times a day, and could become very tired, with no energy when he took sick.
At one stage, part of his bowel died following a gut infection, and he had to have two thirds of it removed.
“He was in the Royal for four and a half months, came home, and then he took sick again and then he died,” Karen said. “He was still really small when he died. He would have worn 0-3 months clothes and 12lbs was the highest weight we got him to. Difficulty in putting on weight is another symptom. He was tube-fed the whole time he was here.
Following their tragic loss, the family said they wanted to make sure other people knew about the condition and wanted to raise well needed funds for research.
Thousands of pounds have already been raised locally for Ireland’s Katie Rose Foundation, through a series of fundraising initiatives including a climb up Errigal organised by Seamus Fox from FF Fitness in conjunction with Daithi’s family, and a charity event at the local Stairway Barbers, and Primrose cafe also held a high tea event. Donations have also been made by the general public on a just giving page and Karen’s younger brother Seán also raised £500 by completing the waterside half marathon and her cousin Michael Kelly raised over £200 by holding a sponsored tattoo event at his local shop, the Tattoo lounge.
“We are so grateful to everyone who has helped with donations and fundraising. People have been so kind, and local businesses as well.
“We have already raised £8,000 for the Katie Rose Foundation and £800 for the NeoNatal in Derry.”
A fundraising Night At The Races will be held at the Cosh Bar in Derry tonight (Friday) from 8pm, with a raffle featuring numerous prizes donated by big-hearted local businesses. Karen & David would like to thank the owners of the Cosh Bar for their continuous help and support thought out the last seven months. Everyone is welcome to come along to the Night At the Races tonight at the Cosh.
For more information on Mitochondrial check out the website: www.thekatierosefoundation.com.